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Why I 'Put Myself Back in the Picture' After Years of Hiding My Body Due to Illness

This is me receiving my first Benlysta treatment. This is something I would normally never share – too vulnerable, too revealing, too real, but this is my reality and I’m taking a risk and sharing it here with you.

woman receiving infusion of benlysta for lupus

Seven years ago my life changed forever when my rheumatologist uttered the words, “It’s officially lupus.” Now, a little backstory – lupus is incredibly difficult to diagnose and I went through about 15 years of this nebulous “it’s something autoimmune,” “it’s lupus-like,” “let’s just blame the fibromyalgia” before I received the definitive diagnosis.

I made a decision to keep as much off social media as possible in the beginning as I figured out the best way to balance maintaining my privacy with letting people in on my new “truths.” As I slowly began to let people in on my “life with lupus” (I wrote a post about it if you’re interested – total self promotion here!) one of the things I had to reconcile was the major change in my appearance.

Due to the joy of prednisone (a.k.a. the Devil’s Tic Tacs), I’ve been carrying some extra weight on my already, um, fluffy, frame. (I was never thin, by any stretch of the imagination, but I certainly wasn’t as “inflatable” as I’ve become thanks to all of the meds). In addition to the extra weight, there’s the moon face, bloated stomach (getting tired of people asking when the baby’s due), water buffalo hump and more.

Then there’s the hair loss – anything from thinning on top to handfuls at a time. There are days I look in the mirror and don’t recognize the person staring back at me – another casualty to the war against lupus. In the beginning, I didn’t want to be in any pictures and hid any time a camera came out. Too fat, too swollen, too ugly.

At my “worst” (I had gained a lot of weight and lost most of the hair on top of my head) we were taking family pictures – four generations. I’ve always been the heaviest of my siblings, but this time I look like I don’t even belong with this group of people, something that upset me tremendously. The worst part is that this is the final set of family pictures we have with my beloved grandparents before they passed away.

I swore that “when I looked like myself again” I’d start getting in the pictures again. I especially didn’t want anyone on social media seeing me looking “so gross” and I certainly wasn’t deliberately posting pictures of me looking “sick.” Then I read a life-changing article by someone who was worried about being “too fat to be in the pictures” and it rang so true. The author spoke about how she avoided the pictures until she almost died and realized she wouldn’t be in the pictures anymore.

It got me thinking. Living with lupus and the amount of near-misses I’d had meant nothing was promised. If the unthinkable happened (sadly, when you have chronic illnesses, you do think about it – too much, but that’s another post) I’d be leaving my kids without pictures of Mommy. My kids don’t care how Mommy looks, they just want me there and in the picture. That was the day I “put myself back in the picture” and realized it was OK.

I know when I go to 20 mg. of prednisone, my face swells up and I gain what I’ve nicknamed my “pelican gullet” swollen double chin. I mostly wear LuLaRoe since, in addition to being the softest, most comfortable clothing (that helps my super sensitive skin), shows off my skinny legs while disguising the six-months-pregnant-looking stomach. (Incidentally, if there are any LLR reps who would like to sponsor a lupie, I’m taking offers!) My hairdresser is amazing at covering the thinning bald spots and as it starts falling out again, we recently dyed it a vibrant red (I figure, like leaves, let it turn a nice color before it falls out).

I’m no longer waiting for my appearance to “go back to normal” since I’ve realized that day is not coming (at least not anytime soon) and I’m not willing to put my life on hold waiting for that day. My kids deserve to have pictures of their mother and don’t care how I look. My husband deserves to have family pictures on his desk and still looks at me as the same “beautiful bride” he met 20 years ago. (I’ve encouraged him to get his eyes checked but they say love is blind).

family standing together on a mountain

I deserve to be in the pictures because they are my “truth.” Which brings us to this picture. I’ve always shied away from hospital bed pics (heck, I don’t usually even tell people when I’m in that place) and when I went through six months of Cytoxan infusions, I never took any pictures let alone thought of posting them.

Fast forward and here I am on display, bloated, pelican gullet chin on display, hooked up to this new IV medication that I’m “cautiously optimistic” will help tame the lupus beast (remember, there is no cure), putting it all out there in an effort to promote awareness and understanding. It’s not for attention (seriously, would you put yourself out there looking less than your best? It’s supposed to be #IWokeUpLikeThis not #BodyByPrednisone) yet that is always the fear when you open yourself up in this way.

So, to those of you reading who are healthy, please don’t censor yourself from the pictures, even if it’s a “bad hair day.” Remember, your loved ones don’t care and just want you in the picture (and chances are, you’re the only one noticing your less than stellar hair). And to all of you reading who are ill, we deserve to be in the pictures as well, not just on the days when we “look good.” We’re warriors fighting immeasurable battles and deserve to have that chronicled. Because war isn’t always pretty.

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